Clinic Designation

Clinic Information — Overview of your clinic, including structure, services, and operations.

1. Major Requirements: Clinics must demonstrate a strong foundation in PKD care, including multiple experienced PKD nephrologists (Nurse Practitioners, Physician Assistants, and other Advanced Practice Providers may also be considered); training in the tolvaptan Risk Evaluation and Mitigation Strategy (REMS) program with experience managing patients on therapy; onsite access to core multidisciplinary care team members; established workflows for measuring total kidney volume through institutional radiology providers; and active participation in PKD clinical research.

2. Minor Requirements: Centers of Excellence must also meet at least three of the following criteria: access to a minimum of four non-core specialists; dedicated PKD clinic time at least once per month; established patient navigator services; affiliation with a transplant center; access to an advanced CKD clinic and a defined workflow for referral to dialysis services (including peritoneal dialysis, hemodialysis, and home hemodialysis); and demonstrated engagement with the PKD patient community through the PKD Foundation (such as participating in webinars or patient education sessions, or hosting a booth at a local Walk for PKD). 

Patient Population — Current patient census, population demographics, and health equity initiatives.

Care Delivery and Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.

1. Core Specialists: Clinics must provide access to a multidisciplinary team with expertise in PKD care, including nephrologists, a radiologist, a hepatologist, a geneticist or genetic counselor, and a pain management specialist. 

2. Non-Core Specialists: Clinics must also demonstrate access to at least four of the following specialists to support comprehensive care: a renal nutritionist or dietitian, urologist, cardiologist, liver surgeon, neurosurgeon or neurologist, obstetrician, psychologist or psychiatrist, social worker, and transplant surgeon. 

PKD Expertise — Justification of PKD-specific knowledge and experience among key personnel.

Patient Navigator Services — Acknowledgment of patient navigator role responsibilities and expectations within your clinic.

Pediatric Care — Description of pediatric PKD services and/or pediatric-to-adult care transition practices, as applicable.

Research Participation — Summary of current, past (within the last five years), and anticipated involvement in clinical research, including both industry-sponsored and investigator-initiated studies.

Clinic Information — Overview of your clinic, including structure and operations.

Patient Population — Current patient census and population demographics.

Care Delivery and Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.

1. Minimum Requirement: Clinics must include at least two nephrologists with a demonstrated interest and expertise in the specialized management of PKD. 

PKD Expertise — Justification of PKD-specific knowledge and experience among key personnel.

Research Participation (not required) — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.

Clinic Information — Overview of your clinic, including structure, services, and operations.

1. Major Clinic Requirements: Clinics must demonstrate strong expertise in pediatric PKD care, including multiple experienced ADPKD nephrologists (Nurse Practitioners, Physician Assistants, and other Advanced Practice Providers may also be considered); a letter of support from the Division Chief confirming the clinic’s ability to manage individuals with ARPKD and pediatric ADPKD; onsite access to core care team members; active participation in clinical research focused on ARPKD or pediatric ADPKD; and an established process to support the transition from pediatric to adult care. 

2. Minor Clinic Requirements: Clinics must meet at least three of the following criteria: access to a minimum of three non-core specialists; dedicated PKD clinic time at least once per month; affiliation with a transplant center; availability of an advanced CKD clinic and a defined workflow for referral to dialysis services (including peritoneal dialysis, hemodialysis, and home hemodialysis); current or recent engagement with the PKD patient community through the PKD Foundation (such as serving as webinar faculty, participating in patient education sessions, or engaging in local Walk for PKD events); and a history of peer-reviewed publications related to ARPKD or pediatric ADPKD care, diagnosis, or associated topics. 

Patient Population — Current patient census and population demographics.

Care Delivery and Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.

1. Core Specialists: Clinics must provide access to a multidisciplinary team with expertise in pediatric PKD care, including pediatric nephrologists, a geneticist or genetic counselor, a pediatric hepatologist, a pediatric renal nutritionist or dietitian, and a social worker. 

2. Non-Core Specialists: Clinics must also demonstrate access to at least three of the following specialists to support comprehensive, whole-person care: a gynecologist or adolescent medicine specialist, neurosurgeon or neurologist, pain management specialist, pediatric intensivist, pediatric radiologist, pediatric surgeon, and pediatric urologist. 

PKD Expertise — Justification of pediatric PKD-specific knowledge and experience among key personnel.

Patient Navigator Services — Acknowledgment of patient navigator role responsibilities and expectations within your clinic.

Pediatric-to-Adult Care Transition — Description of the clinic’s relationship with adult specialists and established transition processes.

Research Participation — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.

Clinic Information — Overview of your clinic, including structure, services, and operations.

Patient Population — Current patient census and population demographics.

Care Delivery and Services — Description of care team members, typical wait times for appointments, and the patient follow-up experience.

1. Minimum Requirement: Clinics must include at least two pediatric nephrologists with a demonstrated interest and expertise in the specialized management of pediatric PKD. 

PKD Expertise — Justification of pediatric PKD-specific knowledge and experience among key personnel.

Pediatric-to-Adult Care Transition — Description of the clinic’s relationship with adult specialists and established transition processes.

Research Participation (not required) — Summary of current involvement in clinical research, including both industry-sponsored and investigator-initiated studies.